Ongoing Symptoms Despite Levothyroxine Treatment

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After many years struggling with ongoing Hypothyroid symptoms, despite continuous treatment with Levothyroxine (125 mg daily) I came up the plethora of information, mainly from the USA challenging the efficacy of the current tendency of GPs to test only T4 and TSH Levels and to prescribe only Synthetic Thyroid Medications (like Levothyroxine) despite evidence that people so treated continued to suffer from many Hypothyroid symptoms. I asked my own Doctor- apparently, tests for T£ levels are "very expensive" and so won't be offered on the NHS, and even if I had private blood tests done, he wouldn't be able to prescribe additional T3 (Cytomel) or Natural Thyroid Extract for my condition. So, I'm left with a choice- self medicate, buying these products from possibly "dodgy" online sources, or continue to take my Levothyroxine and suffer from ongoing symptoms in silence. Not a great choice, is it? I'd be interested to hear about fellow sufferers experiences and advice, please, on what I should do.

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  • Posted

    Elizabeth, I have a history that sounds like yours. Here in Canada we can have Cytomel prescribed and paid for by government health insurance. My specialist put me on it but I noticed absolutely no improvement and he eventually took me off it. This has made me sceptical of wonder cures, but I have not had the opportunity to try the "natural" products.

    Dave M

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    • Posted

      Thank you, Dave. That's very interesting. Cytomel has been very helpful to many HYpothyroid people, but I guess one of the problems with this disorder is, we're all different.  I would be interested to hear from someone who has used Armour Thyroid., or a similar glanduar product, whether there's been any improvement in symptoms. A lot of the people on the Net and in books who are talking about addressing Hypothyroid problems seem to think the natural thyroid treatments were superior to the modern, synthetic products, but here in the UK, one can only "self medicate" with these- which is always risky, epecially if one can't be sure they come from a reputable source.
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    • Posted

      Hi Elizabeth!  I took Levothyroxine for years without any problems, but then one day out of the blue I started having terrible symptoms.  The worse being nerve pain in my feet and restless leg syndrom so bad that it would keep me up at night.  So I switched over to Nature Throid.  It does require a prescription here in the US but it worked wonders on my symptoms.  Most of them went away except for a couple.  I don't feel 100% normal on it, but the improvement was tremendous.  I am 50 years old and I think the imbalance is linked with my changing hormones.  I also read that the natural thyroid meds ramp up your T3 and reduce your T4 levels so I still have a bit of trouble with my muscles feeling week sometimes but I will back off the meds a day or two a week and that seems to help.  All in all - I would never take T4 only drugs again.  I thought I was going to go mad with all the symptoms they caused me.  I have also heard really good things about Thyro Gold which you can get by mail without a prescription.  Good Luck!  I hope you find the right med.  
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  • Posted

    Hi Elizabeth

    Have you considered getting a different viewpoint and seeing a Naturopath who will look at you 'w-holisitically' from the inside out,  instead of just seeing you as a patient with a thyroid condition?

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  • Posted

    Yep. You've summed it up beautifully. My advice would be don't suffer. If you can afford £1 a day, buy your own off the internet. If you continue on levothyroxine you will likely be storing up trouble the the future. I have developed loads of food allergies and intolerances, as have others. I switched to a non-prescription (aka OTC) Natural Desiccated Thyroid (NDT) called ThyroGold in June 2015 and wish I had done so years ago.
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    • Posted

      By thecway, I'm in the UK and have done the switch with the full knowledge and support of my NHS GP. I was forced down this route (OTC NDT) because I became intolerant to fillers in levothyroxine and cannot get an alternative on the NHS.
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  • Posted

    Hello Elizabeth:

    My name is Shelly and I am a nurse in the USA.  I have Hashimoto's thyroid disease since 1987.

    Like everyone else I was diagnosed and prescribed LEVO.  I had really bad side effects and after years on it and my TSH being in the trash can always my doctor changed me to Thyrolar a T4/T3 combo also called Liotrix...not much better.

    Then he ordered Armour Thyroid and I felt okay and started to be energentic again.  My TSH improved but I have a problem with T4 my body could not make T3 well enough.

    So I am only on T3 Cytomel (liothyronine) and I have had my TSH and 3 in good shape since 2009.

    In the UK socialized medicine has a narrow formulary and no options and they refuse to allow NDT.  Many on here go private and buy it elsewhere.

    I will PM you a place that is trusted.

    Regards,

    Shelly

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    • Posted

      Shelly thats funny you say that today about only taking T3 i THINK i MAY BE A CANADATE FOR  T3 ONLY.My doctor and I was talking today about T3 only being the best Remedy for most with our problem. My doctor said he have been doing research and he find, we really do not need T4 (my doctor is a General Doctor that I Lucked up on, from just doing research online. Well.....come to find out after spending hours each visit that he has same problems as we do and now I see why he take this so serious. This was my 2nd visit with him. I also find that I have to give him information on whats best for me due to all of our bodies being so different the medication may act a little different and may need tweaking. I love, love, love that he is open to all my information and dont just cut me off like other doctors have done within my 11 years of miseray. This problem can be your worse night mare the longer you go without finding your treatment for your body. I truely have felt many days that I was dieing slowly!!!!!Its so nice to have a place I can share my exdperience hoping that something I say can help others.

      ​Note: I went to this doctor about 4 months ago and loved him although we was still searching for my correct dosage. I loved he was so willing to help me. I thought at last someone that trully cares. But, I guess for all that he does he cant except insurance so first visit 350.00 and I guess becuase I waited too long to come back I was charged 175.00 today just for visit not bloodwork. I must say, the money was well worth the visit for the time that he put in. Reminds me of how doctors use to work. They actually cared!!!!!The first visit he even gave me a huge hug!!!!!smile

      ​By the way....Money was not easy to come by considering I lost everything I owned as a result of being sick after being admitted into the hospital with the notion of only removing half my thyroid( all my thyroid was gone when I woke  upsad with no cancer. Also accidently removing every parathyroid I owned. lol

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    • Posted

      I will send you new blood work as soon as they send to me for you to observe it for me. You are a wonderful God sent person. My doctor put me on Nature Thyroid 48.75 3 times a day to keep in my system ( we will see how this works- now that I have more knowledge about T3 and whats in Nature Thyroid(this medication has way more of T4 than T3) last Reverse T3 test was low-ummmmmmm I just may be a T3 Canadate! Tell me what you think so far from what I have MENTIONED!
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    • Posted

      Hi Denisemoore:

      It took me from 1987 to 2009 to get to just T3 alone.  So that is a long time. We need T3 more and since my body can't handle T4 I am okay and the best I have ever been now.

      You can see if you can apply for medicaid for people who are ill, and you can try for that.  Check into that.

      You need a doctor who listens and that is 1/2 the battle and the other half is the meds. Which one is for you? 

      Keep me posted.

      Shelly

       

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    • Posted

      Hi Denisemoore:

      Nature's Thyroid is good.  you get all 4 hormones in that.  You need to try it and do give it time to build a level 6 to 12 weeks.  take all meds on empty stomach.

      T3 works for me and if you want to you should try it.  I came alive, so it was a miracle for me.

      Just doing what I was trained to do in life and knowledge is meant to be shared!

      XO, Shelly

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    • Posted

      I thank you I thank you for all your great information. I really think all T3 is what he will end of perscribing because I can tell I need more T3. Especiall since I was so low on it and Nature thyroid still consist of more T4 than T3 evedently my body is not converting T4 properly into T3( I feel this T4-T3 thing is like a waterfall that cant seem to get the proper amount of water to the other side of the river) I am a visual person - I guess that is way hair stylist was my perfession for plent of years before this aweful disease stole my entire life for 11 years. Will It end?????
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    • Posted

      Hi Denisemoore:

      Yes, it will be much better when you are on T3 alone. I came alive and so will you!  Let's get you well. Fight back against this disease.

      T3 is the useable hormone that the body needs and you can start it at 5mcg and then do blood later and see.  They can change the dose as needed.

      Hopefully you can start this soon and see for yourself. I know how you feel, I was in the same boat.

      XO, Shelly

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    • Posted

      i will order some if my doctor will not agree to this tommorow. I have figured it out. He explained all this today but did not change me and just try even tho he said he read all this research on how T3 only is better than all for most. I feel he really was undesided on what to do with me but is hoping this work burt I will still not have enough dorn T3 and I can feel it already. Its not enough. I know my body and I can tell as soon as first dosage of thyroid medication hit my system if its going to work or not. Please tell me the best T3
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    • Posted

      Hi Denisemoore:

      We all need what our body wants. Some can take Levo and be fine and then others need T4 & T3 and some just need T3.

      I have been there done that and tried every med for the thyroid I could.  I found what works and so will you.  T3 is the useable hormone and the body can use it quickly no converting it and my converter left me years ago and never came  back...LOL.

      Cytomel is the same as Liothyronine, it is a bit cheaper and works on  me.  So I use Liothyronine 5mcg and that has been my lucky drug.  I lost many of years from 1987 to 2009 so I know how you feel.

      I get it at Walmart and it is cheaper there.  You can shop it around and call different pharmacies if you have to.

      XO, Shelly

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    • Posted

      I do not understand why doctors re-word things like telling me some months back that my dorn T3 was low so it was never low. It was too HIGH my Reverse T 3 was too high:{ or maybe it just wasnt explained correctly or the best way he knew how to explain it. He really try hard.He draw graphs and all but...........This is like a huge puzzle just as Autism so I go from trying to figure my childs Autism out to this :{
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    • Posted

      Hi Denisemoore:

      The Thyroid is a complex gland and most of these Endocrine glands in the body can do funky things. It can be VERY confusing to understand and they really should give patients a class on all of this.

      Most doctors don't tell the patient much and many have no idea how it is supposed to work, so you have to do your own thing.  Blood work can help tell the picture but then the person has to be told what is wrong and doctor's are seeing a person every 15 minutes, so you do not get much time to ask.

      I was handed an 8 by 11 piece of paper that was xeroxed on both sides back in 1987...and that was it.  No fanfare, no tea & sympathy. NO Internet....nothing!

      It is a puzzle and a nasty one, so we need to try different things until we find what works.  Let's work on the problem and get you pointed in the right direction....ask the doctor to try T3 alone.

      We will solve this,

      Shelly

       

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    • Posted

      Denise, my message went for moderation because I put a link in it. I hope it passes because it's and official link to the autism west midlands site and may be helpful to.others. I searched on the words Autism West Midlands Play. I'll pm you the link.
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    • Posted

      HEllo, I got a perscription I had at drug store for 5mg cytomel and took one today. Early in the morning I had already taken 1 47.8 Nature thyroid/ although i was suppose to take 47.8 3 times a day ummmmm Im hurting now seems more even my neck as im sitting here seems as tho im gettin low on something. any suggestions
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    • Posted

      Hello Denise:

      Is it muscle pain? Where just in the neck?   Try and take a multivitamin.  What do you normally take for pain?

      Shelly

       

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    • Posted

      Yes thank you.......I took a multivitamin earlier. I rem. you saying how important it is. Its like a burning-tingleing sinsatioin in legs, achy back, muscles under arm pits, tingleing on top of feet and burning on my face(cheeks) as well. oh and of course achy when I walksad
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    • Posted

      thank you so much for just trying so hard to help me. I could just hug you
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    • Posted

      Hi Denise:

      Perhaps you got too much today of T3, and the body will settle down, just don't add anymore today.  Does the doctor want both Nature's Thyroid and Cytomel?  One Cytomel is fine for me.  What does he want you to take?

      Shelly

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    • Posted

      Also drink lot's of water to flush your system out.  Low magnesium can make you tingle also.  I think it may be a bit too much T3. 

      Shelly

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    • Posted

      Its weird because it started late in evening I had only taken 48.75(nature thyroid) and 1 (5mg. cytomel)
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    • Posted

      I took nature thyroid anb cytomel way earlier that day ummmmmmmmsad i only dream about having no aches and pains so I can run behind my 4 years and so I can exercise without big problems.
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    • Posted

      I do not drink enough water at all. I really need more water. Also....my doctor do not know I am trying cytomel. I just want to cry because I want so bad for something to work. Im so tired of this 11 years of my life gone. The years go by so fast because all you do is research, research and Pray something work. I have spent all my life savings just trying to live life with less pain as possible and going from doctor to doctor hoping that each one is the last one i will go to praying that I will never feel this way again:{
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    • Posted

      I thought by trying a low dosage of Nature Thyroid and cytomel that would help. But........no that will not worksad
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